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Nurses working with people to live full lives and choose when to die

death-quotes-6

Today on Healthstyles host Barbara Glickstein interviews two nurses working with people to live their lives fully and supporting them to choose how they die.

Stephanie Hope, RN, Founder of Hope Holistic Wellness, is a Board Certified Nurse Coach working to foster holistic health in her community through individual and group wellness coaching. She is a hospice nurse who serves patients and families from a holistic perspective at the end-of-life.

You can hear the interview with Ms. Hope here: HOPERN

The second hour is a rebroadcast of my interview with Judith Schwarz, RN, MSN, Ph.D., a nurse expert in end-of-life issues. She retired from her position as the Clinical Coordinator of Compassion & Choices of New York and is now in private practice consulting with patients and their families on end-of-life decisions. On 11.17, reporterNick Tabor interviewed Dr. Schwarz for The Daily Beast “The Nurse Coaching People  Through Death by Starvation”

Listen to the interview here

You can also tune in to hear it live on Thursday, March 26th at 1 PM to Healthstyles on WBAI, 99.5 FM in New York City (www.wbai.org).

Impact of the Affordable Care Act

Today’s New York Times provides some compelling evidence of the impact of the Affordable Care Act (ACA) on health. Quest Laboratories, a major company that analyzes blood and other body fluid and tissue samples, compared test results by state and found that new diagnoses of diabetes among Medicaid recipients increased by 23% in states that have expanded Medicaid coverage under the terms of the ACA in the first 6 months of 2014. By comparison, new cases rose only 0.4% in states that had not expanded Medicaid coverage. The study was published in Diabetes Care and is available online.

This finding comes as 11 million more people are covered under the ACA’s expansion of Medicaid and the Children’s Health Insurance Program (CHIP), another important safety net program. CHIP is to expire in September and, if it does, 5.8 million children currently enrolled in the program could lose coverage. And all of the ACA could unravel if the Supreme Court rules in King v. Burwell that federal subsidies for people who sign up for health insurance under the federal health insurance exchange are ineligible for this subsidy because the ACA specifies subsidies for insurance purchased on the state insurance exchanges, not the federal exchange.

And all of this comes as as Congress is poised to act on the “Doc Fix” that would end routine cuts in physician payments (and payments to nurse practitioners and physician assistants). Often simply referred to as the “SGR”, the formula for paying physicians under Medicare was developed in 1997 as a way of containing costs by basing physician payments on economic growth. Repeatedly, Congress has voted to delay scheduled cuts. It’s become an untenable situation, with wide coalitions and the Medicare Payment Advisory Commission even calling for its end. Too many physicians were refusing Medicare patients. We need more physicians, nurse practitioners and physician assistants to be available, particularly in primary care. Although the expansion of insurance coverage under the ACA may help the uninsured, it could take a toll on Medicare beneficiaries’ ability to find health care providers who may conclude that their practices are more sustainable if they take patients with private insurance rather than Medicare. One of the potential show-stoppers for an SGR solution is an amendment that would extend CHIP coverage through 2019.

All of this leaves me wondering what those who oppose the ACA think about the impact of its demise on the lives of people who can’t afford care to diagnose and manage their diabetes and so develop costly complications–whether amputations, blindness, kidney failure, or other life-threatening conditions. The ACA is saving lives–and money. Estimates of the costs of diabetes and its complications range f4rom $132 billion in 2002 (more than half of which is related to complications and associated medical conditions) to a more recent estimate of $218 billion in 2008.  Time to move on with transforming our health care system into one that truly focuses on promoting health through primary prevention and early diagnosis and management of chronic illnesses.

Diana J. Mason, PhD, RN, FAAN, Rudin Professor of Nursing and Co-Director, Center for Health, Media & Policy at Hunter College, City University of New York

Older Women Count: Special UN Panel Focuses on Violence Against Older Women

csw59The year 2015 marks a significant milestone – the 20th anniversary of the Fourth World Conference on Women and adoption of the 1995 Beijing Declaration and Platform for Action. This was the focus of the 59th session of the Commission on the Status of Women (CSW59). The annual two-week gathering at the United Nations Headquarters in New York wraps up today.

Despite some progress over the last two decades, the areas of concern identified in the Beijing Declaration are still relevant and urgent today. Violence against women, and in particular, violence against older women, remains an issue that stymies even the most ardent supporters of women’s rights. At Older Women Count, Bringing Visibility to Violence against Older Women 20 years after Beijing, a standing-room only audience learned more about the need to include older women in discussions on gender-based violence and how countries are addressing the challenges.

Approximately 850 million people, or about one in 10, were over the age of 60 in 2012, according to Susan Markham, Senior Coordinator for Gender Equality and Women’s Empowerment, USAID. By 2030, that number will grow to 1.375 billion people age 60-plus; about 16 percent of the world’s population. Older women make up the majority of those over 60, and most live in developing countries.

“Women often outlive men in old age but starting from birth they often have less status, less education, less choice in childbearing, less access to formal employment and are less likely to inherit property,” Bunting said. Yet,“they are more likely to be widowed and to be harmed by traditional practices. Older women are also more likely to experience poverty, as well as social exclusion and many forms of violence.” Age, gender, caste and class are just a few of the many factors working against older women.

Correcting the gender imbalance includes helping women gain better access to education, healthcare, and giving them more of a voice within their communities, Markham said. “We must take older women into account as we work to end poverty and build strong, emergent democracies. It can’t happen without them.”

Kate Bunting, CEO of HelpAge International, a non-profit focusing on the rights of older adults worldwide, and sponsor of the panel said, “despite increasing evidence on how discrimination affects women in older age and the challenges they face, older women are almost entirely absent from the picture.”

credit: Staffan Scherz

credit: Staffan Scherz

She said most measurements of gender-violence — including domestic, sexual and emotional violence — only include women aged 15 to 49. Gaps in research and policy on violence in later life are representative of a host of broader issues surrounding lack of inclusion of age into gender concerns, according to HelpAge. Often, older women and protections for their rights fall through the cracks.

Her Excellency Maria Cristina Perceval, Permanent Representative of Argentina to the UN and forceful advocate for human rights, noted that over a billion women worldwide have been victims of violence in the past 20 years. “This is the real dimension of inequality.”

She reminded the audience that 33 years have elapsed since the UN convention went into force against all forms of discrimination against women, 20 years since the adoption of the Beijing Platform, and 13 years since the adoption of the Madrid international Action Plan on Aging. “These instruments contain concrete commitments to eradicate violence against women; in some cases specifying older women as one of the most vulnerable groups and to protect them from abuse, neglect and violence.”

Governments have an obligation to protect the rights of women, including older women, from any form of abuse and to investigate and prosecute those who commit these acts, including those which result from traditional practices and beliefs,” she added.


Violence against older adults primarily affects women, not just because women outlive men, but also because there is more violence directed against women, according to Kathy Greenlee, Assistant Secretary for Aging, US Department of Health and Human Services.

She recounted the story of one woman who fled an abusive husband, only to be swindled out of her life savings and isolated from family and community by the very caregivers she had hired to help her. “She talked about the loss of pride and trust in others, the impact of emotional abuse. And it was devastating.”

This woman, said Greenlee, was a U.S. veteran, who asked, “don’t I deserve better?”

Greenlee uses this story as a way to grapple with the significance of the work, in terms of both numbers and impact. “I believe that the abuse of older people – women and men – is simply an outrage against humanity,” she commented. “It is so disrespectful to all of us, as humans, to face this in old age.”

It’s easy to just see older women as a category, but they’re not, she added. “Older women are us.” It’s the women you see in the mirror, whether she’s with you today or arrives in 20 years. It’s us. It’s a phase of life that presents opportunity as well as vulnerability. In this regard, I consider it an outrage that it happens.”

Greenlee reiterated the need for older women to be part of the conversation about gender violence.


There’s a need for more data, and more innovative approaches to create resilience among survivors, she said. That requires the global community to talk about this seriously and come together to find common solutions. Those on the panel, and those in attendance are committed to making that happen before another 20 years passes.

The entire panel discussion is available on UN-TV (runs 1 hour, 15 minutes)

 

Healthstyles: Continuing the Conversation about Racism and Health

racism stop

The repeated public examples of subtle and blatant racism demonstrate the importance of conversations about the role of racism in the health and well-being of individuals, families and communities. As part of Healthstyles’ ongoing series on health disparities, co-producers Kenya Beard, EdD, NP-C, and Diana Mason, PhD, RN, FAAN, talks about these issues with Willie Tolliver, PhD, MSW, professor in the School of Social Work at Hunter College and three of his social work students: Jason Cartwright, James Gilliam, and Kim Wolfe. Their authentic and candid discussions about the deaths of Eric Gardner and Michael Brown include their own experiences with racism and how it plays out in the lives of all of us.

So tune in on Thursday, March 19, 2015, to Healthstyles on WBAI, 99.5 FM in New York City (www.wbai.org) or click here to listen anytime:

HealthCetera is sponsored by the Center for Health, Media & Policy at Hunter College, City University of New York.

What Would #ThisNurse Say? Info, Outcomes & Reality Checks for All

Photo by Akira Ohgaki Flickr Creative Commons.

Photo by Akira Ohgaki Flickr Creative Commons.

In their article, “If Patients Only Knew How Often Treatments Could Harm Them,” for The New York Times last week, Austin Frakt and Aaron E. Carroll discuss a recently published systematic review out of JAMA Internal Medicine. This study looked at the gap between what patients think will help them, and what will actually harm them. The original article suggests that patients choose treatments with unrealistic expectations because they are uninformed. Clinicians should inform them, and help them face reality.

Frakt and Carroll tease out many points from this loaded conclusion, largely centering on their opening line: “If we knew more, would we opt for different kinds and amounts of health care?” While their facts are on-point, I have a problem with their, and the study’s information-based fix. 

Although it’s a sticky place for a registered nurse to independently initiate conversations about the benefit of procedures at the bedside, we work with patients undergoing them every day. And when the doctors have left, we often see how these situations of unrealistic expectation involve far more than a patient’s knowledge. This article got me wondering what my nursing voice might add to its discussion. 

Considering the author’s accusation that clinicians rarely quantify the benefit of tests and procedures to patients, I’ll break down one of their facts from my bedside nurse point-of-view, and explain how simply increasing patient knowledge might not always do the trick. 

A single CT scan exposes a patient to the same amount of radiation as 300 chest X-rays, and carries with it a 1-in-2,000 chance of inducing a fatal cancer.

Let’s take a case I read about recently. A young man has a procedure with moderate sedation and is admitted overnight for observation. He hasn’t eaten since midnight the night before, and when he makes it to the unit, dinner is over. He’s drowsy, starved and a little nauseous. After standing to walk to the phone, he passes out and lands on the floor, hitting his head on the way down.  

A look into his chart shows that he has no bleeding problems, no comorbidities precluding him for a stroke, and his nurse assesses no neurological changes after his spill. The head bump was slight, but the doctor orders a CT scan just to be safe. 

Does this patient need one? Likely, no. If he waited with close monitoring by a nurse, he’d probably suffer no effects and save himself the cost of those extra rays. But he’s young, it’s hospital policy, and nobody wants to miss a potentially life-threatening side effect of his accident. 

Technically, the test isn’t really appropriate, and is largely done out of institutional fear. Whether the test’s main benefit is to the patient or the institution, is where Frakt and Carroll’s information-fix argument falls short – even if the patient was comprehensively informed, he’ll likely choose to accept this CT scan, which for him, is a low-benefit-high-risk test, because of the fear of the unknown. This is not a jump into unrealistic expectations, and despite all factors, additional info on outcomes would probably change little. 

On the other hand, look at my grandmother: She’s 97, and recently told my father that she may have swallowed her dental partial. A Chest x-ray showed no partial, but did show a small mass on her lung. Her PA was willing to do a CT scan as the next logical step, but because of my grandmother’ age, left the decision up to my family. We talked to each other, we talked to my grandmother, and she decided the test was unnecessary. 

This time, the CT was clinically indicated, and low-risk, but technically invalid. While my grandmother might suffer medical harm from her decision not to proceed with an investigation, her personal definition of harm excludes her from this test. In her case, the decision was largely her own, and although her inclusion of the test may have helped her clinically, my grandmother’s realistic view had less to do with the information her clinician provided, than the information he didn’t provide.  

Finally, there’s the situation of the deathly ill woman in the ICU. Initially presenting with a large stroke, she developed an infection that led to ventilator dependency and very low blood pressure. The medical team believes the patient will not benefit from further aggressive measures, but they’re on the cusp of talking with the family about her prognosis because they have suspicion that the woman has suffered further brain damage. So, they order a CT scan as a last piece of evidence to make their case.

This CT scan will not change any proactive treatment for this woman; if her stroke is found to have worsened, the team’s treatment will not change. It is done to show the family that the woman is in fulminant organ failure, and her condition is irreversible. This CT scan will not benefit this woman, and in fact, it will likely put her at higher risk because of the transport to and from the procedure in her acute state. But, the test is done in order to help the family accept her condition. In a way, the very test, not the information surrounding its benefit or harm, is the solution to unrealistic expectations. 

The authors of this article are correct – patients must know the risks and benefits of procedures they asked to undergo. But the risks are often not contained to numbers and evidence, as much as the nuance of each, individual situation. And while I defer to provider judgement before giving my individualized assessment of risky procedures to patients and their families, I do believe a bedside view of this study is imperative to understanding the gap between its data and our reality.

This post is by Graduate Fellow, Amanda Anderson, RN. What Would #ThisNurse Say? is her media project that analyzes New York Times coverage of nursing. Amanda tweets as @12hourRN

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